" He gets to have the freedom he needs, playing on the games consoles or splashing in the pool "
Eleven-year-old Nathan, from Walton in Liverpool, has Duchenne Muscular Dystrophy, a degenerative condition that slowly weakens the body’s muscles, including the internal organs such as the heart and lungs, meaning those with the condition rely on a wheelchair by the age of 12. The average life expectancy for those with the condition, which mainly affects boys, is 26.
“Looking after Nathan is a full-time job,” his mum Clare explains. “Our day starts at 6.30am, getting him ready for school and giving him the first of three daily doses of medication. Being his carer puts a lot of pressure on all of us, including Nathan, who wants to be as independent as possible.
“Nathan has been going to Claire House on the Wirral for about a year. He comes for ten nights a year and he loves it. He gets to have the freedom he needs, playing on the games consoles or splashing in the pool and we get a little break to spend time with our daughter Faye, who’s 16 and doesn’t get the attention we’d like to give her because we’re so focused on Nathan.”
Getting to the current hospice site can be expensive for the family, who rely on taxis and public transport and can take over an hour. “Having a new hospice in Liverpool would be amazing. Nathan could take advantage of so much more.
“Most 11-year-olds would be playing on their bikes after school or popping down the road to see their mates. With a new hospice in West Derby, Nathan can enjoy some of the normal things he should at his age, like going to see some friends who also use the hospice or hanging out with Marvan, his favourite Play Specialist.”
It’s to offer respite for families like Nathan’s that Claire House desperately needs to do more.
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